Tag Archives: Mirame los Ojos

hear say

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I’ve taken such a nice long break that I forgot my password.

I remembered it. <smile>

It has been good. I needed it. We all need it.

For me, vocalizing is not usually difficult or strained. Facial expressions too… I can’t hide them. Gosh I really can’t.

My husband. If you know him, you know expression is his world. He’s a talker…much, MUCH more than I am. It comes easy.

For William, every word is mainly work. Something for others to hear.

I see the wheels turning, the eyes shifting… I know there are thoughts, but many times it is silence I hear.

With two expressive parents, it must me in his genes somewhere. Trapped at times.

I can’t speak for him, not always the way he would like me to. His sister has, does, and will often. Those two.

My questions are not always the right questions.

But I do try…probing constantly to get a true depictive response from him.

But, those are words. Really, just words.

If I look closer, he speaks often.

Each raised eyebrow, pause, snicker, and hand gesture… speaks to me. It’s loud sometimes and yes, I do sometimes yearn for it to come in one easy box of simply uttered words.

Sometimes it does and I relish…pondering on it for days sometimes. Ok years.

His expressions. I’ve learned to live and breathe for. I’ve learned to hear him with passing hours of no words in sight. It’s all there.

It’s a different bird though and not easily caught.

In fact, I know I have missed it many times by waiting for words.

Don’t get so caught up in the words that you miss the expression.

Sometimes you just need to just shut up to watch the expression unravel. <smile>

You’ll hear so much more.

To read more blogs from Melanie, Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com
   

Celebrating Autism: Waiting in Line

Happy New Year everyone…let’s get to work

I’m sitting here watching some NCAA football, the fire is on, the dog is asleep at my feet, nice glass of vino within arms distance…perfect scenario to blog!

I was going through the family computer and cleaning out files and documents that we don’t need.  My wife has a “William” folder with all sorts of documentation and notes and all that fun stuff.

In the file are notes from our 18-month legal battle with our insurance company, notes about what William was doing at certain ages, much of the stuff she used to write our book “Look At My Eyes”

I opened one document that described William at 2 years and 7 months of age–just before he was officially diagnosed with autism and our lives continued to change.

One entry said “has serious issues with patience.  Won’t stand in line, refuses to wait–flips out if he can’t have it now!”

So today as my wife was sick in bed with flu-like symptoms and the kids were getting cabin fever, I took them to the Children’s Museum (a HUGE staple in our weekend routine all year ’round)

They have amazing exhibits and the kids love to go there.  As with many families on the spectrum, we have our routine.  We get our tickets, we go to the gift shop, we say “hello” to Ms. Lisa, we take off our shoes and go down the Dyno-slide, then we go and do other things…but it always happens like that.

As William and his sister were going up-and-down on the slide I realized that William was very patiently waiting in line for his turn.

Kinda made me chuckle.

Another exhibit they love is some spinning mechanism–I don’t know what it is, you step on it, hold on and it spins you and you get all dizzy–kids love that stuff you know.

As usual, there was a line.  Immediately William said (in his broken-but getting better-communication skills)…”not your turn, wait in line…not your turn, wait in line…not your turn, wait in line”

And that’s what he did.  Over and over and over, he waited in line, was patient and  calm, took his turn, flapped a bit, got back in line

“Wait in line…it’s not your turn.”

So ironic that I found the report of almost 4+ years ago where my son was not willing or able to stand in line, be patient, wait for it…and here we are…not saying he’s destined for greatness–but HAVE HOPE PEOPLE…every year that passes we notice successes (sometimes big, sometimes small) and hurdles that he clears.

Way to go my son!  I am proud of you for learning to stand in line, wait your turn, be patient…

now you just need to teach your old man that patience thing…Happy New Years

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com

Genetic Testing for Autism…what do you think?

Recently an individual sent me a Facebook message about my opinion regarding genetic testing and autism in expecting mothers.

Wow…is that a hot topic or what?  Let’s discuss…

First of all, my opinions are my own.  They are not to judge you and your opinions and they are not to say they are the ONLY or RIGHT opinions.  They are the RIGHT opinions for me and my family and my child who has autism.

If I could go back 6-years ago before William was born and have him tested for autism…would my wife and I have done that?

NO WAY.

We had the opportunity to have him tested for other disabilities–that seems pretty common these days–and we elected to skip those tests as well.

I can’t imagine my life without my son.  Sure it’s not the way I imagined it before he was born, sure there have been many frustrations and expectations that have had to change…but there’s not a minute that I would change (well okay, maybe a few minutes when he used to poop and spread it all over the place…can I erase those memories from my mind?)

To have someone say, “your child is going to be born with autism” would be amazingly sad and depressing.  Now some people might say, “well if you are told beforehand about the condition of your child then you will have time to digest it and cope with it.”

To that I say…”that’s a bunch of BULL CORN if you ask me”

Why do people want genetic testing for unborn babies to know if they’re going to be “different”…let’s be honest here people, they want to do it so they can then decide to keep the child or not.  Plain and simple.

William is a precious child of God.  He is a gift to my wife and me and an integral part of our family structure.  He has autism.  He has language delays, he has fine motor skill delays, he seems fairly smart but I’m sure he has some cognitive delays as well.  I don’t know if he’ll live on his own, hold down a job, go to a four-year college or university, go on a date, kiss a girl, have children, dance with his daughter on her wedding day…give the eulogy at my funeral.  I do not know.

I know his testing, therapy, medicines, treatments, research, schooling…has cost us a lot of money.  I know that I would rather have spent that on “fun stuff” like trips or goodies…or just as savings to build up our nest egg.

But I also know IT’S NOT ABOUT ME.  IT’S NOT ABOUT MY SELFISH AMBITIONS, WANTS, DESIRES.

It’s about loving this precious child that we have been blessed with.  It’s about honoring God and serving him to the best of our abilities.  It’s about using our God-given abilities and talents and combining them with our passion to help our son and to help our community understand more and more about autism and other Pervasive Developmental Disorders.

I know, I know, I know…those in favor of this will say, “it helps diagnose a child on the spectrum so early…”

And yes it might…and then what?  Until the age of 3 what can you really do for a child on the spectrum?  I’m sure there’s something but from what I’ve seen/heard/learned/been told…age 3 is really when they can get a proper diagnosis and the child is “capable” of benefiting from scientifically-based and scientifically-proven therapies such as Applied Behavioral Analysis.

Still…it comes down to this…WHAT’S THE POINT?

Is the point of life about you and your happiness?  Is the point about using your gifts, talents, strengths and abilities to make the world a better place?  Is the point about putting your selfish desires and ambitions aside to serve those who can’t help themselves?

Remember…your child didn’t ask to have autism.

I can pretty much guarantee you that 100% of those on the spectrum would ask NOT to have it again if they could make that decision.

But to not be born at all?

Maybe I’m wrong here.  Please tell me that I am.  Maybe these genetic tests are really going to be used as a positive test and tool to come up with a “cure” for autism or to  help diagnose children….but I just can’t believe that.

We have seen too many “good” things in this world be used for evil even if that’s not the intended purpose.

Where will it end?  Already 90% of children that have been tested in the womb to have Downs Syndrome are aborted.  What would happen if all of a sudden the autism gene is detected?  When does it stop?  Not the right hair color?  Not going to be tall enough?  Smart enough?  Right handed?  Left handed?

You know it’s just a matter of time before those genetic tests are released to the public…and so what happens then?

You can believe in a higher power.  You can not believe in a higher power.  You have your thoughts on issues…fine.

But this is your child we’re talking about.  This isn’t life-or-death.  This isn’t danger to the mom or baby or whatever.  This is “ehhh…I’d rather not be inconvenienced with the idea of having a less than perfect child”

Tell me I’m wrong.  Tell me I’m crazy.  Tell me this isn’t what it’s all about.  Because if it is…I want no part of it.

Oh…and buy our book 🙂 and in Spanish too 🙂

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!

Autism and Cord Blood Stem Cells…what’s a father supposed to think?

Recently I was sent an online article from BioResearch Online entitled “Autism and Cord Blood Stem Cells: FDA Gives Green Light For Ground Breaking Clinical Trial.”

I know I may seem pretty darn smart (I tell myself that often) and I know I look super smart BUT I am at a complete loss when it comes to cord blood, stem cells, bioresearch and all that!  Of course I’ve heard of the terms, but after reading this article it certainly gave me a sense of hope.

Could my child really ever be “cured” of autism?  Is it right for me to have that hope?  What does this all mean?

A couple of things came to mind…I immediately wanted to know how I could sign up for the clinical trial.  What parent wouldn’t be interested in that?  I also started thinking…”what if we were part of the trial and were the placebo element of the trial?”  Would that suck or what?

If you’re a parent of a child on the autism spectrum you probably know where I’m coming from.  We’ll do just about anything to help our son, William, who is now 6-years-old.  Just imagine him talking to me.  Just imagine him not stemming or making that awful squealing noise CONSTANTLY during the day.  Just imagine him leading a “typical” lifestyle.

One of the key chapters in our book, Look At My Eyes that my wife and I wrote in 2011 (now available in Spanish as well Miarme los Ojos) discusses how important it is for the family to be unified in their decision for treatment, therapy and expenses when it comes to their child with autism.

I’ve seen (and experienced first hand) too many couples and families who have had major arguments and divisions when it comes to these issues.  No father wants to deny his child services…but not many fathers can actually afford to do every therapy, treatment or service…at least not this father.

When William was younger my wife, Melanie, would drive all over the DFW Metroplex (if you don’t know…it’s very big) to go to this doctor and that therapy and this activity…hoping to find a solution or therapy.

It was a HUGE strain on her, our son, the family checkbook and our relationship.  THE BIGGEST KEY to making the marriage survive when dealing with special needs children is to BE ON THE SAME PAGE!

I’m sure there are risks involved with this cord blood stem cell research…has to  be, there are risks with just about everything.  I don’t know if my wife would be as excited as I was when I read the article.  She might be more hesitant when it comes to the health of William and potential risks.

There are many “cures” out there…many that are medical or have medical claims but PLEASE BE CAUTIOUS…this is your child we’re talking about here.  A “cure” does not exist…so be careful not to put all your hope and trust in a claim that could potentially be harmful to your child.

Finally I thought, “do I want my son ‘cured’ from autism!?”  Is that twisted or what?  Yeah I want him cured.  Yeah I want him to be typical.  Yeah I want him to be happy.

But what if he IS happy?  I know he gets frustrated with lack of ability to communicate at times.  I know we are frustrated when we are dealing with his behaviors and such.  But does that mean he’s not happy?

Is it my happiness that I’m seeking or his?

Would William BE William if he took a magic pill or cord blood and didn’t have autism?

Have you considered that?  I don’t think I had until I read this article.  Almost like in The Matrix when Neo has a choice…take one pill and stay the same…take the other and your life is totally different and you can’t go back.

It’s not that easy of a decision is it?  On one hand you don’t want to deal with autism and all that stuff…but on the other hand, if your child is “cured” all of a sudden, are they the same child?  Different?  Better?  Worse?

In conclusion…bring on the trial.  The way our FDA and government work it’ll be 2040 before they approve or make a recommendation.  At least it’s a start–so who knows, maybe they’ll find a cure that will help children and change our society forever.

Meanwhile…take delight in your child.  Your child is YOURS…a gift, a blessing–no matter how much the stem or squeal or wipe poop on the floors.  Focus on the joys your child brings you when they are able to communicate….when they do look at your eyes

Be a team with your partner…be on the same page with finances, treatment and therapy.  Cord blood stem cell or not…love your child for who he/she is…yours!

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!

Don’t look at my son like that!

I hate “that look”…if you’re a parent (especially a father) of a special needs child…you know what I’m talking about.

This has been a busy summer for our family…a great summer for my children, getting to be with family and friends and especially cousins…they love their cousins.

My 6-year-old son with autism has really had a great summer.  He attends summer school and loves that–he’s been going to school pretty much year-round since he was the age of three…that might sound a little mean, not to give a kid a summer break, but with early intervention and solid reinforcement and ABA therapy, he’s happy and improving with his verbalization and socialization.  William loves being around his cousins and so having a few family vacations mixed into his busy summer school schedule is quite a treat for him.

This past weekend we were able to join my side of the family on an extended weekend in the Texas Hill Country to hang out on the Blanco River and all be together.  He did a fantastic job!  His cousins are mostly girls and a few years older and, together with my very strong-willed 4-year-old daughter, they keep him very involved.  It brings me great joy to see him being around his cousins because he is just one of the bunch.  He doesn’t have the typical friend relationships because he doesn’t really interact with other children.  He doesn’t sit in a corner or anything like that when other children are around–he’ll be near the action–but he’s not really part of the action.

During our vacation we took everyone to a swimming hole that was a ton of fun!  It’s in a state park where there are huge trees, river access, tubing and the all-important rope swings.

Now my son is not one to really be adventurous.  I don’t know if he’s afraid of things, maybe just a bit cautious.  This is his first year to really enjoy swimming–thanks to 6-8 months of swimming lessons–and while he’s mostly a dog paddler, it’s very freeing for me and my wife to not have him either stand on the side while everyone else is in the water, or cling onto us in the water for dear life.

So back to this rope swing…so much fun!  They had one just for children and the line was long to enjoy it.  Kids would grab it and swing into the very chilly water of the river and do it over and over and over again.

I was just happy William was in the water–it was really cold and for those of you who have seen William, he’s a string bean with very little meat on his bones to keep him warm.

I had no thoughts of William ever wanting to attempt the rope swing, but when I causally asked him, imagine my surprise when he not only said, “YES” but got out and headed right over to it.

For the next 3+ hours that’s about all he did…it was fantastic!  He would climb up the little ladder, grab the bar on the rope and hold onto it and swing into the water.  He didn’t hold on very long most of the time–so it was like he was jumping into the water–but it was a thrill to see him be a “typical child” and get so excited to be doing what all the other children were doing.

So I was pumped up!

Then came “that look” (and you thought this was just going to be a blog where I gushed praise and joy…nope)

There I was, helping him stand in line (not easy) and get a hold of the bar of the swing.  His cousins and other family members were taking pictures and just having a great time enjoying that he was having a great time.

As we were standing in line he was shivering and flapping.  He still flaps when he gets excited and he was not only really excited but he was probably really cold because the water was cold and there was a wonderful tree canopy.  So as we were standing in line shivering and flapping I noticed two younger boys staring at him and snickering to themselves.

These boys were probably 8 to 10 years old if I had to guess.  They were also enjoying the rope swing…and they were enjoying noticing that my son wasn’t typical.

Here I was, on Cloud Nine because my son was doing something daring and brave, he was having this fantastic time and I was so proud of him…and yet I was crushed.

That look…you all know what it is don’t you?  Maybe you don’t see it directly but you certainly can feel it when you’re out in public and your child is doing something that’s reserved for our Special-Ism Children.  That look.

I wanted to push those boys into the cold river water.  I wanted to get into their 8-year-old faces and give them a piece of my mind.  I wanted to defend my precious boy, whom I love and am so proud of for all the progress he’s making.  I wanted to cry, scream, fight…everything.

I did nothing.

As I stood there, William flapping and making his inaudible noises, the boys giving that look and snickering at one another about how William was behaving, I just stood there…taking it all in.

Just like that cold river water, the splash in face of cold reality just crushed me.  The reminder that my son isn’t “typical.”  That he’s not just one of the boys.  That he is going to probably stand out in many situations for the rest of his life.

So on this day of joy and gladness…it was also a time of reality and sorrow…and that sucked.

What should I have done?  What should you do when you get “that look”…what have you done in the past?  Here are a few thoughts…I’d love to hear your opinions on what I should’ve done…

1. Ignore…easier said than done but I can’t go through life with a huge chip on my shoulder about my son.  I can’t be there to defend him from those looks and snarky whispers.  So maybe we just ignore?  Ehhh…that’s hard

2. Confront…I almost did that.  I almost tapped those boys on their shoulders and gave them a piece of my mind.  Not that I would’ve really gotten onto them,but maybe I would’ve gently informed them of William’s situation and how they should be celebrating his accomplishments like the rest of us

3. Make a scene…again, would that have accomplished anything?  One of my concerns about making a bigger deal out of it was that I didn’t want to put a damper on William’s experience.  Although he doesn’t talk much and oftentimes doesn’t appear to be paying attention–I KNOW that he would’ve understood what was going on and I don’t want for him to be more and more aware that he’s not “typical”…that he’s different from others.

4. Removed ourselves from the situation…but why?  Why should my son be punished and removed from a fun situation just because others are making fun of him or commenting about his actions and behavior?  I’m glad I didn’t do that.

5. Blog about it…bingo!  That’s what happened.  SO here I am, expressing my sorrow and frustration…but was that the right thing to do?

I know I can’t be there for my son every time someone gives him “that look.”  Maybe he doesn’t care if people are looking at him like that.  Maybe he doesn’t even know they’re looking at him like that.  Maybe it’s all on me.

Whatever it was, it was an incident that still sticks in my brain.  There we were, having a great time–and we still had a great time–playing, experiencing, participating, enjoying…and yet there’s always that little reminder that our children aren’t quite the same.

Anyone have any thoughts?  Would love to hear

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!